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Meanwhile Josette had made some phone calls and that's how we know that the physician from Argonaut has sent his advice to CVZ on December 13 without telling me about his advice. From CVZ we got a copy of that advice and we both were very startled as we read it. His whole letter is wrong from top to bottom and is all over CBT/GET (Nijmegen here in the Netherlands , the insiders will know what I mean). According to his letter I for example can stand, walk, crawl, kneel, bent etc, I can sit normally and I have no disabilities! Furthermore I seem to be chronic fatigued according to him, am I not sick because they won't find anything out of the ordinary, is it better that they take away my useful equipment (wheelchair etc.) and PGB so I will not be confirmed in me being ill and I have to do CBT/GET so that after that my complaints will be gone. His conclusion is also that I don't belong to the group of people who should get a fokus-apartment and he also didn't think it's necessary to fill in a score list which normally always has to be filled in. The person from CVZ who handles my case doesn't agree with the way this physician handled, also because he hasn't filled in the score list and because he didn't sent them all the papers (as the papers Josette had made to show them my moments of care etc.) so now she has to go after them herself. Josette meanwhile also has had contact with this Argonaut-physician and he claims that his data is correct, that he didn't suggest things in his letter and that he doesn't discriminate (denies me due to ME). Well, his letter invalidates everything he says. Josette immediately has written a letter to CVZ with our remarks/objections and now we only can wait and hope that CVZ still decides in my favour. Normally the advice of the testing physician is followed 9 times out of 10 and this to me would mean 'no fokus-apartment, what then ???!!'.

Monday January 24 someone from CVZ called to tell that my request for a fokus-apartment has been denied. As reason it was said that I need too much care as for my surrounding (cats, making my surrounding as less stimuli-free as can be, lamps on/off etc.), but that I on the other hand need too less care as for personal factors (washing, dressing etc.). I think this is rather contradictory. I also don't think it's fair; at last I am not physically able to be washed on bed daily, be dressed (I only wear a night shirt, because I am too sick for more to put it on and off each time when I for example have to pee), leaving my bed/house weekly etc. So I strongly have the feeling and the idea that I have been denied due to ME.
CVZ by the way came to 51 hours of care a week! That is a lot more then the 12.9 hours of care I get now from RIO/CIZ (household care hasn't yet counted in at both). As advice CVZ mentioned some kind of nursing home for young people, however for this you need an indication from CIZ and so it's again the same organisation where I have to be. The organisation which doesn't approve more hours of care, which didn't approve the urgent appeal from my gp for a temporary admittance at a nursing home back in August, the organisation I am fighting against for years now!
During the PGB-retest on February 15 we will bring this up, because CVZ advises CIZ when their decision is being objected. You would actually think that now CIZ will agree for an indication for that youth nursing home or more hours PGB. Again we have to wait.

The next day finally some good news; a letter from Disability that they have decided to not change my disability income! Yes, I won't have to go to a retest!
Apparently they have gone through my dossier on January 19, because personally I haven't noticed anything from a retest. Just as all Dutch fellow sufferers I too was worried about the disability retest. Although I did get my disability end 2003 for 5 years I also got a letter a year later that I would be summoned for a retest. Considering the stronger policy I was pretty worried. Although I am completely bedridden and not able to go to work, I also have ME (which is not been accepted as a disease through which you aren't able to work anymore) and who says that the examiner would think the same as I? So I am extremely happy that I (probably) will not be retested for the next 5 years; I say probably because you never know what more crazy ideas our government will come to think of later or sooner. But well I have been released from those worries, a lot of fellow sufferers however unfortunately not.

The following part is very funny, at last it is in Dutch. Because the translation doesn't work in English you have to remind a few things; in Dutch we say 'koortslip ' which literally translated is 'fever lip', in English though 'fever lip' isn't a word and the correct translation of 'koortslip' is 'cold sores'. A 'koortslip' is a herpes simplex virus; you get blisters around your lip and you mostly get them when you have a fever and that's why in Holland it is called a 'koortslip'. To make the joke work you have to remember that in Dutch 'cold sores' are being named 'koortslip' which translated means 'fever lip' (which is the word I will use in the piece of text down below).
Since a few weeks I have trouble with my big toe. It started with an itch and was being followed by some kind of tiny blisters. At a sudden point I had 1 big blister next to my toe nail and there were many small blisters around my toe nail till even halfway the bottom of my toe. The itch became pain at a certain moment and it started to look weird and a bit filthy, so my nurse called my gp to tell him about it. At least it wasn't paronychia (an inflammation of the nail fold), they thought about gout though. There has to put betadine on daily and after the weekend we had to call my gp back if it didn't get any better. Well it wasn't and so my gp came to see for himself. He also thought it looked weird. He thinks it somehow looks like herpes simplex virus or 'fever lip'. I looked at him completely perplexed as he told that and I really laughed out loud. Well, I said, I have regularly a 'fever lip' at my lip or at/in my noise, but I have never had or heard about a 'fever lip' at my (big) toe *LOL*

January 2005 part 2

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